Author Topic: Continued progress at month 21  (Read 8544 times)

wcrimi

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Continued progress at month 21
« on: September 02, 2010, 11:40:27 am »
I haven't visited the forum in awhile, but I wanted to give some of you an update and encourage others that are fresher out of surgery.

For anyone that is still struggling with balance issues, dizziness, wonky head, and any other feelings of disorientation when active, turning their head quickly etc... I just wanted to report that in the last week or so I seem to have reached a new peak in my recovery. I am still not 100%, but the intensity of almost everything that has been bothering me is still diminishing and I am feeling more and more normal as time passes.

I still feel a little worse after a particularly draining or stressful day, but even there my recovery time is improving.

So for anyone that is feeling discouraged about the pace of their recovery or wondering at what point they will stop improving, I'm at 21 months and I'm still getting better.  ;D    Be patient.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

kenneth_k

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Re: Continued progress at month 21
« Reply #1 on: September 02, 2010, 11:51:04 am »
I'm happy to hear your good news. :)
Sometimes recovery can feel like an endless journey without improvement.
It is important that we share when things are looking brighter.

Best regards, Kenneth

Jim Scott

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Re: Continued progress at month 21
« Reply #2 on: September 02, 2010, 12:39:14 pm »
Hi, Wayne -

Thanks for your very positive 21 month update.  I'm so pleased to learn that as your recovery continues you notice improvement in different areas.  We appreciate those who've experienced good recoveries making the effort to re-connect on the ANA discussion forums and post their good news.  I expect you'll continue to see even more improvements in the months to come.  I did. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Lizard

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Re: Continued progress at month 21
« Reply #3 on: September 04, 2010, 01:19:24 pm »
Its the little wins, happy for you!  I still see progress at almost 2 years as well.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

badbadbrain67

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Re: Continued progress at month 21
« Reply #4 on: September 04, 2010, 04:34:32 pm »
Thank you wcrimi. I am in my 10th month of recovery and as I posted in another thread similar to this one to let someone know that even though sometimes you can't tell, you are healing.
Like I said before, sometimes I realize that I can do something I couldn't do before. The recovery was so gradual I couldn't tell. I'm still not 100% and I suspect I have a long way to go, but I hope to get there one day.
Sometimes I do wonder if I have gone as far as I can go and I read a post like yours that lifts my spirits. I decided long ago that I would let my recovery be a mere annoyance (not an easy task) instead of an
unclimbable hurdle. Easier said than done but I've got other more important things to do, mainly getting on with my life.
For those of you just out of surgery hang in there. It does get better. I personally cannot tell you how your recovery will progress and neither can anyone else here. It's very individual. and we all have different stories to tell.
It amazes me that someone with a smaller tumor than mine (mine was almost 5cm) can end up with worse problems than I did. then there are the people who are back at work two weeks after surgery. That I cannot fathom.
I have always looked at the progress I've made instead of how far I've got to go.  I think it's a good and positive way of looking at the healing process. I've said it before and I'll say it again.

Victor

leapyrtwins

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Re: Continued progress at month 21
« Reply #5 on: September 04, 2010, 06:25:23 pm »
Wayne -

great to hear from you.

Glad you are still making progress - extremely promising for those newer members among us.

I'm 3+ years post op and still get a few "issues" (mostly balance and dry eye) when I'm stressed or over-tired.  So, some of what you are currently experiencing may never truly leave you. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sunfish

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Re: Continued progress at month 21
« Reply #6 on: September 08, 2010, 01:16:12 pm »
I had CK, not surgery, but thanks so much for your post.  I've been struggling with balance/wonky head.  Very frustrated.  Was a lot better this last weekend, worse today.  I'm only about 6 months out from treatment.

Posts like yours give me hope!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

LisaP

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Re: Continued progress at month 21
« Reply #7 on: September 08, 2010, 01:36:18 pm »
Hi,

thanks for the update, I continue to W&W, next MRI is in Oct.  Wish me luck.

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

cindyj

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Re: Continued progress at month 21
« Reply #8 on: September 08, 2010, 02:05:22 pm »
Hey, Wayne!  Glad to hear you're doing well!  Our anniversary is coming up, isn't it!  I think I am now as good as I'm going to get - which is not bad at all.  I do everything (and more) that I did pre-op.  Just have to be a bit more careful when doing certain things and have to put up with a bit of wonky head at times.  Does not stop me...you're right, patience is the key, along with pushing yourself a bit if you have to (in my opinion :) )

I waved to you from the subway last week ;)  Went to the Open again.  Almost didn't go because of the hurricane threat, but so glad we did.  Are you going this year?  Go Nadal ;D

Take care!

Cindy 
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

wcrimi

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Re: Continued progress at month 21
« Reply #9 on: September 08, 2010, 04:08:15 pm »
Hi Cindy,

Great to hear from you.  I thought it was you waving to me.  ;D 

Yes, I'm going to the quarter finals tomorrow afternoon.  I can't wait.

Wayne 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Brewers7

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Re: Continued progress at month 21
« Reply #10 on: September 09, 2010, 02:44:28 pm »
Thanks for your post.  I am just a few weeks behind you, so I was particularly interested.
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

wcrimi

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Re: Continued progress at month 21
« Reply #11 on: May 06, 2011, 10:12:35 pm »
I'm at about 30 months now. So it's about time for an update.

I'm at the point where on the typical good day when I go for a long walk I feel fairly close to normal.  My balance isn't perfect and I still have a little waviness in my head, but the intensity is low and it's not there all the time.  When I'm VERY active (like running, jumping, turning quickly, playing tennis) the intensity of the waviness increases fairly sharply, but it's still way better than it used to be.  It also increases when I get tired.

About the only difference I can identify over the last few months is that if I rated my days as good or bad, a higher percentage of my days are of the good variety.   ;D 

I did sort of hit a new short term peak today (which prompted me to give the update), but it didn't last long. 

It was beautiful in NY today so I decided to play a little tennis.  Tennis is tough. I can play, but I do feel the waviness when I'm running and I also usually have a little trouble following a rapidly moving tennis ball.  But today I was running and playing tennis and felt about as close to normal as I have since surgery.  It was easy to follow the ball.  It was very exhilarating.   ;D    A couple of hours later I was back to "my normal", but I'd have to say that even at 30 months I think I am still making forward progress.  It's so slow, it's hard to notice, but something is still going on otherwise I wouldn't have had such a peak day.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Jim Scott

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Re: Continued progress at month 21
« Reply #12 on: May 07, 2011, 01:16:20 pm »
Wayne ~

Thanks for the encouraging update.  I'm pleased to read about your progress.  I was at about the same general place at my 2½ year mark (post-surgery).  I felt that I was probably as good as I was going to be.  I had just spent a week with my family at Disney World, went on many fast rides and did a tremendous amount of walking, all in the heat and sun of a Florida summer.  I did fine.  Now, another 2½ years have gone by and I still consider myself to be pretty much fully recovered from my AN surgery and subsequent radiation.  As I like to say: 'life is good'.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wcrimi

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Re: Continued progress at month 21
« Reply #13 on: May 08, 2011, 09:37:43 pm »
Jim,

Do you feel you are still making slight progress or did things more or less level off after 2 1/2 years or so.

Wayne
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

ombrerose4

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Re: Continued progress at month 21
« Reply #14 on: May 09, 2011, 09:01:15 am »
So glad to hear about your continued progress. I am 20 mos. post op and although I still get fatigued easily, I recover quicker than I did 6 mos. ago. It is always encouraging to hear from others that recovery is continuous. And like you I can look back on the last month and say I had more good days than bad ones.  :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010